I am desperate, please I need help!!!

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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

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  • Posted

    If you were diagnosed hyperthyroid two months ago, why were you not started on Carbimazole at that time?  60 mg a day is an atrociously high dose, in my opinion, and is not justified.  I am on other Boards and I have rarely seen anyone given that dose unless they were having a thyroid storm.  In fact, the allergic reaction usually happens when people are started on extremely high doses.  Removing your thyroid will not solve your problems.  There are plenty of reports from people who have had either thyroid surgery or radiation and then given levothyroxine as replacement who do not feel well and have enormous problems with weight and energy because it is not as good as your own thyroid hormones and it is only one hormone when your own thyroid produces four.  You need to become an empowered patient and learn all you can about this disease and become more proactive in your care.  The first thing you must do is always get and keep copies of your lab reports and learn about the tests that are done and what they mean.  I will pm you with more information.
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  • Posted

    I too was allergic to carbimazole, it was a horrible experience. Stop taking it and go back to your doctor or get them to talk to the endocrinologist. The alternative drug is PTU (propylthiouracil) which worked OK for me but I didn't want to be on it longterm so opted for radioactive iodine treatment. I became hypothyroid but now have been stable for over 3 years on daily thyroxine tablets. It took a few months to get the dose of thyroxine correct but for me it has been a successful treatment. I just have to remember to take my pills first thing every morning.

    AgW

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  • Posted

    Thank you so much for your reply linda187 and AgW.

    AgW, I am happy for you that eventually worked out; I heard people struggeling with the thyroide and all that the treatment involves for their whole lives.

    Linda187 I have been on treatment only 3 weeks ago because then was my appointment with my endocrinologist, they are moving so slow in this country (England). Even though I am really new to all this problems, 60mg dose it seemed to me too high as well, but the doctor ensured me that it is for my own good because FT3 was at that time over a hundred. Since this Saturday, the doctor reduced my dose to 40mg/day, but seems like it is still very high for my body as I am having this very aggresive allergy.

    I have already went to the emergency, at the hospital and they could not do much apparently... sad

    Thank you also for your opinion about removing the thyroide!!

    Many thanks!

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  • Posted

    Hi Andreea13, just to let you know I had a similar reaction during the first weeks on 30mg Carbimazole. My skin felt very hot and itchy, on arms, back, at times even the palms of my hands. For some reason it was usually worse at night.  

    It gradually got better and dissapeared completely after the dose of Carbimazole was reduced. 

    If at all possible try and avoid scratching as it will only make it worse. I used a cooling lotion like aloe to calm the skin down. 

    I also found it helped me to split the dose of Carbimazole and take the parts throughout the day. Hope you feel better soon.  

     

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  • Posted

    Hi Andreea, I was put on 40 mg and had horrendous reaction - not as bad as you, but was emailing my consultant every five seconds and just took certrizine and had to take nytol to sleep - it was hell.  I was going to swap to PTU but it started to ease - my skin was on fire and so red and itchy - never felt so bad.  However it did ease and calm down.  There is no way I could have worked.  Can you take time off work?  Please dont worry about the weight gain - its the last thing to worry about, you need to just concentrate  on getting your thyroid back on track.  I got Graves in April 2013 and had carbimazole until Sept 2014 - I finally started to feel normal again this year and have had normal readings.  Every day I feel more like myself and appreciate it so much.  You will get there, it just takes time. xx
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  • Posted

    Hello Andrea:

    My name is Shelly and I am a nurse in the  USA.  I have Hypothyroid but I just wanted to address the symptoms you have.

    First of all, it sounds like a bad reaction to the medication and if I were you, I would stop the medication. Some people can have a bad reaction to carbimazole.

    If you have any difficulty in breathing you must go to the A&E or Emergency room.

    The main point of the medication is too slow down a Hyperthyroid  thyroid gland. They can remove a lobe of the gland also, but you do need an endocrine surgeon who knows what they are doing.  The idea is to try and slow it first with the Carbimazole and then if needed proceed to surgery.  The medication has been around a while and it has helped some people.

    All doctors have to have an Emergency number in the USA.  Even if in the UK, they have to leave you with coverage or be able to be reached.  However if you need to be seen, do so by going to an A & E or Emergency room. 

    I am not sure you will gain weight but they just want to bring down your Hyperthyroid gland, and of course we must watch our diets also.

    Take care and let us know how you do.

    Regards,

    Shelly

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  • Posted

    I was diagnosed last year with hyperthyroid and Grave's disease.  I too was given a really high amount methimazole(carbimazole same drug just different maker).  Dr. started me off 60mg every darn day.  I trusted the Dr so I took it as directed.  Then 3 weeks into it I started gettting hives and some muscle cramping and itchyness on my skin.  I told my dr and did lab to get an idea on where im at.  The Dr saw me and started telling me to plan this 2 week scenario of seclusion because she wants me to do radioactive....  Prior to the doctor visit I scoured the internet about why am i getting this hives am I allergic to it and is radioactive theraphy really my option.  I found out that I was just given a really high dose of methimazole and radioactive not good with my condition because i have Grave's disease also.  So when I went in the Dr.s office even though the Dr was persistent about that radioactive I told her that radioactive is not an option at the moment.  I asked politely to lower my dose and lets try it again. In short after 1 week my itchyness and hives are gone.  So after that experience I found out that when I get than itchyness my body is just reacting to this over medicated dose that i've been into and when i sense that i get that I go to the lab right away to get blood test done.  As it turns out my Dr said Im the only patient she knows that is so sensistive to Methimazole and my body reacts so fast.  My T4 and T3 are curbing towards hypo but my TSH is still not reading.  As months progesses we just kept lowering my dosage.  To now 5mg every other day.... Thank goodness I didn't go thru that radioactive... Hope this helps and try an experiment with your doctor to lower the dosage and see what happens
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  • Posted

    Hello everybody,

    Thank you so much for all your messages, for encouragements and for sharing your experiences!

    Today I could finaly reach an endocrinologist (not my doctor because she is on vacations).

    This doctor that I spoke to, he told me to stop Carbimazole straight away (I stopped it this morning) and that in few days when his letter will arrive to my GP, to start to take other treatment.

    I really could not understand the name of the next pill that I am going to take, but for sure as soon as I will know, I will do some research about it. The only thing I remember he said is that about 50 mg of this medication si equivalent of 5 mg of Carbimazole, and that this will be my dose.

    My skin is finally getting back to normal. I still have rashes in some areas, which are stil itchy and painfull, but only one day without Carbimazole and my allergy is better then with any other anti allergy pills.

    The very curious fact is that I went to the A&E 2 times last week (Tuesday and Sunday), first time with the begining of my allergy and the second time when it got really worse. Both times doctors runned blood tests, they said that the values were normal, but indeed that my body reaction is very aggressive and that I should contact my endocrinologist because they are not entitled to reduce or withdraw my medication and they just let me go home like that.

    Anyway lucky me that I could finally reach an endocrinologist to tell me what to do. In the A&E I really heard many opinions like risc of leuchimia, or heart attack and I was really scared but I think the best way is to find one good endocrinologist that could be trusted!

    Now although my allergy is healing, I have very strong pain of the joints but I suppose as soon as all this substance will be eliminated, also these simptoms will be gone.

    Also I really hope that my next treatment will only make me better, even though now, after what I have been through. I am really scared of any medication.

    I will write to you any other news I'll have and hope to hear from you as well!

    Andreea

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    • Posted

      Hi, so pleased you have seen the consultant - you will be fine on PTU.  

      Also you will be suffering with heightened anxiety if anything like me - it is a horrible condition and the thyroid affects every cell in your body.  Just give it all time, don't rush things, as much as you would love to.  Rest as much as possible and eat well - apparently sticking to a higher protein diet will help according to my consultant - however I never stuck to it, last thing I needed was a diet sheet! X

       

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  • Posted

    I'm glad you got the help that you needed.  The drug is not bad just in very high doses which is true of most drugs.  The side effects of liver disease and blood count problems happens at high doses usually, not low ones.  I have never been on over 10 mg of Methimazole and I have not had any problems.  Even people who require higher doses should be started on lower doses and bulit up to a higher dose.  I don't think she should have put you on that dose in the first place.  It sounds like he is going to switch you to the other drug, PTU (short for propylthiocuracil).  You can overcome this and you will heal if you want to and if you become a proactive patient.
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    • Posted

      My endo wanted me to start PTU also when i got itchy... What's the difference between that and the methimazole or carbimazole or tapazole? But because i insist on lowered dosage im still taking methimazole
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  • Posted

    Hello,

    Starting from tonight I will also take PTU.

    I just read the side effects and I am terribly scared.... The problem is that some seriouse side efects are quite comon, (1 in 100) and deaths or liver transplant 1 in 10.000.

    What do you think about this medication?

    In my country this tablets are forbiden.

    I think that even if I had that very bad allergy to Carbimazole, they should have just put me on a lower dose. Now I will take 50 mg, 2 times per day of PTU. Do you think I have reasons to be worried?

    I will see my doctor in 2 weeks, am I safe until then?

    Thank you!

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  • Posted

    Hi Andrea

    PTU is the alternative drug to take instead of Methimazole.  You should not be taking both PTU and Methimazole.  The negative side effects of both drugs are identical and usually only happen at high doses (effects such as liver damage and blood count abnormalities).  As I indicated, you did not need to be on as high a dose of Methimazole as you were on.  I was able to lower my FT3 and FT4 as well as raise my TSH on the supplements Regular L-Carnitine, Acetyl-L-Carnitine (especially, though you need to monitor frequently and alter dose frequently), vitamin D and anti-inflammatory supplements along with a low dose (10 mg and then 5 mg of Methimazole).  The Acetyl-L-Carnitine  sort of doubles the effects of Methimazole without having the allergic side effects because it crosses the blood-brain barrier.  I would imagine it would do that with PTU as well but I have never used PTU so can't tell you much about it.  Please do not take both Methimazole and PTU together.  Your doc will not know anything about supplements as they are not trained in this.  This was my personal experience.

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  • Posted

    I checked my medical records and I was actually at 30mg methimazole per day and had that symptoms of itchyness, hives.  They thought I was allergic and but I am not because Im still taking it but at a lower dose until now.  She wanted to take me off methimazole, but I did pleaded with her to lower my dosage. Anyways, my endo lowered my dosage to 10mg per day.  I am very sensitive to methimazole , I get those itchyness and hives if i get over dosage so I kept going to ge blood test every 2-3 weeks or when I feel something different so she could fix the right dose for me.  
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    • Posted

      Now i go get blood test every month because my tsh is finally showing. and t4 and t3 are kinda within range
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