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I am desperate, please I need help!!!

Posted , 9 users are following.

Andreea13
Andreea13

I have been diagnosed with hyperthyroide about 2 months ago and 3 weeks ago I started carbimazole (60 mg/day)

Since a week I am fighting with an extremely aggresive alergy. I have been at hospital in the emergency department 2 times last week. They did all the necessary tests and got to the conclusion that despite this horrible allergy, I should not stop taking my treatment. They also gave me some anti-allergy drugs which so far are acting very slow. My allergy is almost all over my body, especially on hands, shoulders, neck and face. It is not only itchy but more like my skin would burn. It also migrates from one place to another and gives me nausea, very strong headache and fever at about 36.5 - 37. 

Honestly since a week I am living in a hell, I am trying to work but my work request a lot of concentration and how could I concentrate when my skin is burning?!

I tried to reach the doctor that prescribed the medicine (endocrinologist) but I could not find her and my appointment with her is only in 3 weeks, how could I live with this for 3 weeks? sad(

My other concerc is that I was always very skiny but since I started taking carbimozale, I ganed about 5 kg. I am really horified that if I will continuie to gane wheight like this I will become fat.

What could I do? Is there any other treatment for hiperthyroide but less harmfull? Would it be better if I would just remove the thyroide (with surgery) and then to just keep its function with medication? Would I still be in danger of gaining wheight?

Last but not least, is it true that this medication (carbimazole) is still an experimental drug?

I am looking forward for any answers, opinions, ideas and experiences in the fight with the thyroid.

Many thanks,

Andreea

0 likes, 25 replies

25 Replies

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  • Andreea13
    Andreea13

    Posted

    Thank youy Linda!

    I stopped Carbimazole since this Tuesday, as the doctor advised me.

    I understood that 10 mg of PTU is equivalent of 1 mg of Carbimazole so eventually equivalent would be of 10 mg of Carbimazole/day, just that is PTU.

    These 2 medications as far as I understood, are not the same: the PTU has worse side effects and worse because leads to death...

    I will definitely get some supplements, I just need to be stabilised with one medicine and also to establish my dosage, to have my blood tests results (they are still on the way from the A&E to my GP and only when my GP has the documents, can give it to me). I will definitely scan them and send them!

    For the moment I am just concerned with this PTU... seems very aggressive with the body.

     

  • linda187
    linda187 Andreea13

    Posted

    Actually untreated hyperthyroidism results in thyroid storm which often results in death.  PTU is recommended for pregnant patients in the first trimester.  I don't think it is any better or worse than Methimazole at the lower doses.  Most patients prefer Methimazole.  Either medication is awful at doses that are too high.  While I used a combination of low dose Methimazole with supplements, some patients with hyperthyroidism have also treated their disease successfully totally with supplements such as Bugleweed, Melissa and Motherwort along with vitamin D, and magnesium.
  • Andreea13
    Andreea13

    Posted

    Wow.... that is really interesting!

    Indeed both medications are awful. For the moment my body is really messed up...or it's just me...but I am ganing weight from drinking water, even if I do not eat few days all the kgs are still there. I really hope that this nightmare will end up soon.

    • hypnocool
      hypnocool Andreea13

      Posted

      I have gained weight when i took propanolol more like water weight I looked liked a marsmallow man.  Maybe you're gaining weight at the moment becase your body is responding to carbimazole and its supressing in making thyroid hormones.  Before  when youre hyperthyroid and eat and eat and doesnt gain weight but now your thyroid is kinda working with meds.  Our disease also controls our metabolism.
    • Andreea13
      Andreea13 hypnocool

      Posted

      Ah, so you can gain wheight from propanolol??!! I am on Propanolol since more than 2 months... so that explains why I gained 10 kg in a month and a half.... ah thank you!
  • hypnocool
    hypnocool Andreea13

    Posted

    If you're really concern about the side efffects of PTU, call your doctor to lower your dosage of carbimazole for now and get blood test done every 2 weeks or 3 weeks to tether with dosage.  I myself wouldnt take that PTU but if you do take it, drink lots of water and research about foods that are not going to put more strain on your liver like foods with traces of pesticides, sodium nitrites, liquors and etc...
  • linda187
    linda187 Andreea13

    Posted

    How much propranolol are you on?  I didn't need the propranolol much after I took the Methimazole.  Only occasionally I take a low dose of it if I have palpitations or rapid heart rate but each patient is different in their needs of it.  It made my blood pressure drop too low.
    • hypnocool
      hypnocool linda187

      Posted

      Here the sequence:

      Start dosage by endo: 

      2. Start taking methimazole 10mg 3x/day.

      3. Start taking propranolol 20mg 3x/day. Always check your pulse before taking propranolol and change the dosages accordingly: If pulse >100 take 2 pills, 60-99, 1 pill, <60 no pill.

      after 3 weeks made me stop methimazole until i see my endo which is in a week after stopping methimazole.

      then we barter with lowering dosage: instead of radioactive theraphy or ptu.  

      1. re-try methimazole 10mg a day.

      2. if you develop rash or skin itchiness, stop methimazole, call us right away to schedule radioactive iodine thyroid uptake and scan and treatment. need to be off methimazole for 1 week. also you need to check pregnancy test prior to your treatment.

      3. just to be prepared, please start arranging child care etc to be ready for a few days of radiation isolation after the thyroid ablation treatment.

      4. continue propranolol per protocol.

      after 2 months of propanolol i asked the endo if i could stop taking it and so she said it's ok since my t4 and t3 are within range and my pulses are are in the norm.

      so now im propanolol free, 5mg every other day, eat brazil nuts 1 or 2 for my grave's disease.;

        no="" pill.="" after="" 3="" weeks="" made="" me="" stop="" methimazole="" until="" i="" see="" my="" endo="" which="" is="" in="" a="" week="" after="" stopping="" methimazole.="" then="" we="" barter="" with="" lowering="" dosage:="" instead="" of="" radioactive="" theraphy="" or="" ptu.=""  ="" 1.="" re-try="" methimazole="" 10mg="" a="" day.="" 2.="" if="" you="" develop="" rash="" or="" skin="" itchiness,="" stop="" methimazole,="" call="" us="" right="" away="" to="" schedule="" radioactive="" iodine="" thyroid="" uptake="" and="" scan="" and="" treatment.="" need="" to="" be="" off="" methimazole="" for="" 1="" week.="" also="" you="" need="" to="" check="" pregnancy="" test="" prior="" to="" your="" treatment.="" 3.="" just="" to="" be="" prepared,="" please="" start="" arranging="" child="" care="" etc="" to="" be="" ready="" for="" a="" few="" days="" of="" radiation="" isolation="" after="" the="" thyroid="" ablation="" treatment.="" 4.="" continue="" propranolol="" per="" protocol.="" after="" 2="" months="" of="" propanolol="" i="" asked="" the="" endo="" if="" i="" could="" stop="" taking="" it="" and="" so="" she="" said="" it's="" ok="" since="" my="" t4="" and="" t3="" are="" within="" range="" and="" my="" pulses="" are="" are="" in="" the="" norm.="" so="" now="" im="" propanolol="" free,="" 5mg="" every="" other="" day,="" eat="" brazil="" nuts="" 1="" or="" 2="" for="" my="" grave's="" disease.;="">

      after 3 weeks made me stop methimazole until i see my endo which is in a week after stopping methimazole.

      then we barter with lowering dosage: instead of radioactive theraphy or ptu.  

      1. re-try methimazole 10mg a day.

      2. if you develop rash or skin itchiness, stop methimazole, call us right away to schedule radioactive iodine thyroid uptake and scan and treatment. need to be off methimazole for 1 week. also you need to check pregnancy test prior to your treatment.

      3. just to be prepared, please start arranging child care etc to be ready for a few days of radiation isolation after the thyroid ablation treatment.

      4. continue propranolol per protocol.

      after 2 months of propanolol i asked the endo if i could stop taking it and so she said it's ok since my t4 and t3 are within range and my pulses are are in the norm.

      so now im propanolol free, 5mg every other day, eat brazil nuts 1 or 2 for my grave's disease.;

       >

    • Andreea13
      Andreea13 linda187

      Posted

      Now I was lowering my dosage and I was taking 80 mg/day (40 morning and 40 evening).

      Actually I just took my first tablet of PTU and I stopped propanolol. I read in the lefleat that it has a bad interraction for body (both medcines in the same time). Ah but in the same time I just rememberd that my GP said to stop propanolol gradually, so I might take only one pill in the morning for few days. Did you stop yours suddenly?

      Hopefully I will feel good with this new treatment smile

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