1. Community
  2. Diabetes and hormone problems
  3. Hyperthyroidism

Overactive thyroid nightmare!

Posted , 8 users are following.

karen18367
karen18367

Hi folks.

on 21st January 2015, after 2 separte blood tests, I was diagnosed by my doctor as having overactive thyroid.

i was prescribed Propylthiouracil 400mg a day and Propranolol 80mg a day , 4 weeks later and I'm worse than how I felt before I went on medication , it's a nightmare , how long does it take until I start to feel normal ?

0 likes, 11 replies

11 Replies

  • jeanette25032
    jeanette25032 karen18367

    Posted

    Hi Karen

    what symptoms are you having now.

    I have been on propylthiouracil for almost 4 years and still feel like hell. Not sure if the thyroid makes me feel like this or the meds. My left arm, chest, neck hurt, numbness in hands and feet, back pain and allergies to most things including perfumes which makes it difficult going out. Dizziness and breathlessness and odd vision means I don't drive anymore. I think I will opt for a thyroidectomy this year as I have had enough. 7 years of this crap. It took 3 years for a diagnosis.

    Why are you on propylthiouracil and not carbimazole? I was initially on Carbimazole but was allergic and swapped to propylthiouracil.

    Don't know if my symptoms are all thyroid related or not as I tested positive to lyme so hopefully you will have an easier time with it.

    Let me know your symptoms as you have to keep an eye on liver function and wbc on this medication.

    Regards Jeanette

    • karen18367
      karen18367 jeanette25032

      Posted

      Hi Jeanette,

      The symptoms I am having are very low mood , extremely emotional, exhausted all the time , sweating a lot at night and really itchy , no concentration or interest in anything , tears running down my eyes for no reason. I am struggling to get to sleep at  night .

      The doctor didn't put me on carbimazole as I wanted to get pregnant in the future, he said would be safer on propylthiouracil.

      Regards 

      karen  

    • jeanette25032
      jeanette25032 karen18367

      Posted

      Hi Karen

      what we're your lab results. When I started on propylthiouracil my FT3 and FT4 were highest normal but my TSH was 0.03. I started on 200mg daily then after a year went down to 150mg, then 100mg. I now take 50 to 100mg daily. Itching isn't good on this as it may be affecting your liver. If you notice yellowing of eyes or skin or sore throat, mouth ulcers, blood blisters in your mouth then you must go to ER for blood tests as this drug can cause liver failure and agranulocytosis (I think that's the correct word) problems with low WBC. Your dose seems high but depends on your lab readings.

    • julie2510
      julie2510 jeanette25032

      Posted

      Hi girls ive got over active thyroid and was firstly put on Carbimazole and it didnt agree with me so i was put on Proplthiouracil and ive been on these for about 6/7 weeks now and for the passed week ive hab bad tummy cramps and diaherra does anyone no weather this could be my meds thats causing it.
  • debbie38655
    debbie38655 karen18367

    Posted

    Hi ladies.  not sure if i am any help but I have had thyroid problems for 10 years now. starting low then going high and then into graves disease.  I had all your symptoms and more and yes it is horrible.  a real roller coaster ride.  i had a thyroidectomy a year ago and had instant relief from most of the symptoms.  still have the low moods happening but probably not to the depth i used to.  All i can say is write down all your symptoms when they happen, what may have caused it (eg stress, not eating well etc).  tell your doctor everything, keep up with your blood tests (keep a record of your levels yourself so you can see if there is an improvement)....if you find nothing is working and you are not getting the right treatment change doctors straight away.  Good luck with your treatment and your baby making....
  • linda187
    linda187 karen18367

    Posted

    Are you taking it in 3 equal divided doses 8 hours apart?  I do not know what your lab values were on diagnosis but I do know with the other drug, Carbimazole (called methimazole in Canada) that doctors mistakenly give high doses based on lab values of thyroid tests and there have been medical articles written that state such high doses are not required to achieve positive results.  Most patients have problems with higher doses of the antithyroid drugs, causing uncomfortable side effects and in the case of these drugs, liver toxicity and/or low white blood counts.

    For myself, I have Graves disease caught early with my levels not extremely high out of range.  I was on Methimazole, 10 mg for 2 years and two out of three thyroid blood tests normalized right away but my TSH (thyroid stimulating hormone) remained at less than 0.001 for two years until I added the supplements L-carnitine 3,000 mg and vitamin D, 1,000 mg to my treatment.  I did this based on a medical research paper I found that showed it was beneficial to hyperthyroid patients but most doctors do not know about this and will not recommend it.  I took it along with my dose of methimazole.  Then my TSH began to rise and FT3 and FT4 lowered.  I switched to another form of carnitine called Acetyl-L-Carnitine 1,000 mg and my levels really normalized with my thryoid antibodies decreasing.  As my levels improved, my doctor lowered my dosage of methimazole in half.  Carnitine is an amino acid naturally found in the body that is deficient in hyperthyroid patients.  Hyperthyroid patients are also deficient in vitamin D and other vitamins and minerals.  The more you research as a patient, the more empowered you will become to get well.  Always get a paper or electronic copy of your lab tests and keep your own records.  Most traditionally trained doctors do not know enough about this disease.

    • karen18367
      karen18367 linda187

      Posted

      Hi Linda,

      Yes I am taking it 3 times a day , I have asked my doctor on several occasions is there a certain time I should be taking them , she confirmed there wasn't.

      I am on a waiting list to meet with the consultant but was advised can take up to 20 weeks for the appointment.

      Thank your for all your advice, I shall research more into overactive thyroid.

      Regards

      Karen

    • sarah00123
      sarah00123 linda187

      Posted

      Hi Linda, can you tell us where to find this medical research paper, I would live to take it to my Dr to show him that it helps? Thanks
  • linda187
    linda187 karen18367

    Posted

    I read where it should be taken 3 times a day 8 hours apart from each other.
  • kitykat14
    kitykat14 karen18367

    Posted

    WHENEVER UR DOC GETS THE RIGHT COCKTAILS OF MEDS, IT'LL BE ADJUSTED UNTIL UR LEVELS OR RIGHT, IT'LL BE A LONG ROAD, SO STRAP UP FOR THE RIDE. I WAS PUT ON SOME DIFFERENT TYPES OF MEDS, I DON'T KNOW WHAT SYMPTONS YOU ARE HAVING. I'VE NEVER HEARD OF THOSE MEDS, GO TO THE WEBSITE ABOUT HYPER THYRIOD AND YOU WILL LEARN A LOT, U WILL BASICALLY BE A GINNY PIG UNTIL UR DOC FIND THE RIGHT TREATMENT, IF SOME MEDS DON'T WORK FOR A WHILE, HE OR SHE WILL TRY SOMTHING ELSE, JUST STAY WITH IT, I DID AND I FEEL WONDERFUL....

     

    • sarah00123
      sarah00123 kitykat14

      Posted

      Well done, I think the Drs do know what they are doing, they have after all done 7 years plus at med school and most of us are amateurs guess what might be right for us. What suits one person does not necessarily suit another. L carnitine is linked to heart disease in a big way and whilst it might raise your tsh it is most likely damaging your heart, so you pay tour money and take your choice as they say in Yorkshire!!!
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.