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

From Carbimazole to PTU due to hive

Posted , 7 users are following.

rita87269
rita87269

Me again...

I was on 20mg Carbimazole since 5 weeks ago following Graves diagnosis. The medicine was working really nicely on my hyperthyroidism symptoms up until 2 days ago when I developed a nasty hive and a very sore stomach. For one day I was lethargic, completely unable to do anything else then be in bed (which was a massive change from the hyperthyroid life I had! I haven't slept in the afternoon in years!). Today I feel much better but the endocrinologist by email suggested this is an allergic reaction to Carbimazole and told me to stop immediately.

When I told her how disappointed I was, she suggested I could start PTU straight away instead.

I am here looking for experiences of people going form Carbimazole to PTU. As well I would like to know how can I be sure this reaction was induced by Carbimazole and not by something else?

Thank you

0 likes, 33 replies

33 Replies

Prev
  • linda187
    linda187 rita87269

    Posted

    While there are warnings about negative liver tests and blood count problems with the antithyroid drugs, usually I hear of that happening at the high doses.  I have always been tested for liver and CBC every time I get thyroid labs done and have always been fine.  For those of you who cannot take the drugs due to side effects, the Natural treatment of Bugleweed, Lemon Balm have been known to work well without the side effects.  You can research more about this on the Internet.
    • grayesthistle
      grayesthistle linda187

      Posted

      Liver failure is 1 in 10,000 for PTU and it does not depend on the dose. It is an autoimmune reaction that is spontaneous so it is not possible to predict who will react this way. For methimazole the risk is for serious liver injury not failure and it's dependant on the dose . Also, risk for PTU to wipe out all your white blood cells is 1 in 500. And there's only a 19%-40% chance of remission. This is something to think about. I keep trying to post other information but this forum won't let me.

    • Karmaway
      Karmaway grayesthistle

      Posted

      I'm not ever taking the chance with PTU if you research it it's not good at all. However we're all different and I think the clue here is dosage and not taking too much of either of them 👌.

  • rita87269
    rita87269

    Posted

    I am not sure what "high doses" mean for you as 20mg/day of Carbimazole was given to me by he endocrinologist as a low dose... the alternative was 40mg/day with levothyroxine, to block and replace. Which I have rejected in favour of only 20mg/day.

    She just replied to me to continue taking Carbimazole if the hive is settling or else to take 200mg PTU/day in two doses of 100 each. I don't know if this is a high dose, I am terribly confused now and I don't know what to do 😞

    • Karmaway
      Karmaway rita87269

      Posted

      You need to follow the directions of your GP/Endo Rita. We can't give you concrete advice it's just feedback about what we do. I was offered 20 mg of carb but I refused I agreed with my GP to take 5 mg and knew it would take longer for my levels to come down. We are all different and need different treatment. Defo not one size fits all. Get a second opinion from a different GP or Endo maybe? It is confusing but it will all work out! I definitely recommend Paleo though it's helped me immensely! I think I told you this before 😃

    • rita87269
      rita87269 Karmaway

      Posted

      Hi there, thanks. The problem I have here is that she is not suggesting one thing, she said "if the hive is settling I am happy for you to continue Carbimazole or else 100mg twice a day of PTU will do as well". I cannot judge if the hive is settling, it changed by comparison with Sunday but I never had a hive before so I have no clue. I feel a lot better than yesterday but I don't know if this is related to the hive settling.

      WRT to paleo I already do something very close to it and I am gluten free. I could hardly eat better than I do...

    • Karmaway
      Karmaway rita87269

      Posted

      Is that the endo? Ugh she needs to help you a bit more than that! 😩 Oh yes I remember but giving up grains was the one that helped me the most! Along with most carbs! 😃

    • rita87269
      rita87269 Karmaway

      Posted

      Yes, that's the endo... I have to see her next week and at that point I will have the results of the blood taken yesterday too. I might decide to continue Carbimazole until then and see what the neutrophils are like as well as all the TFTs... I am not happy with the idea of starting a new drug now when I don't really know what the effect of the previous one are. I was feeling really good last week... what about if this is an allergic reaction to something else and I go ruin the good balance I was achieving with Carbimazole?

      Argh...

      Thank you for the help!

    • Karmaway
      Karmaway rita87269

      Posted

      In nearly gave it up too but it was preferential to the hyper symptoms it just meant I needed to take less. I also take a homeopathic version of it to offset the symptoms. On the flip side my friend got hives and went on to PTU with no probs at all. Trial and error I I guess! No problem just sharing my experience and I can remember it well being freaked out about the meds etc x
    • linda187
      linda187 rita87269

      Posted

      10 mg was the highest dose I was on and I felt better as it was lowered first to 7.5 and then 5 mg.  While 20 is certainly better than 40 as far as side effects, I found when I added supplements, my doc was able to quickly lower my dose as my lab tests quickly improved.
  • rita87269
    rita87269

    Posted

    Thank you all for he preciousness suggestions. I have decided to stop Carbimazole for a couple of days and not start PTU, I need to read more about PTU. If the hive has gone then I will ask the endo to start Carbimazole back at a lower rate.

    By then I should see (a) if the hive has improved (b) if my white cell count has improved (it was just about within range at last test 2 weeks ago, having dropped since the start of he cure) and (c) if my TSH/FT3 and FT4 have improved. So I will have more information to base my decision on.

  • gillian19995
    gillian19995 rita87269

    Posted

    Dear Rita ,

    In 20014 I was changed from Carbimazole to PTU as I had developed a low neutrophil count on Carbimazole after four weeks.

    I followed a regime on that drug. It worked well for me.I was told it has a different chemical make up. I have not had much of a problems.Over with it. I am on my second relapse with Graves and have been given it again. It worked very fast reducing my T4 from 62.8 to 9.1 in four weeks .

    The only thing I am careful about is not drinking alcohol and get a liver function test done regularly. I am also carefully about taking paracetamol whilst on it as I don't want to put my liver under any extra stress.

    It is the only drug I can take.I do sometimes get acid stomach so take it in two equally smaller doses after food rather than one big dose. It is a drug to be careful with but I do not want RAI so am willing to take it but on as low as dose as possible.

  • rita87269
    rita87269

    Posted

    Thank you Gillian for your experience.

    I update this post for everyone that helped me here too.

    I have seen the endocrinologist today and reluctantly she gave me a lower dose of Carbimazole, 5mg/day. She is pretty convinced that the rash will be back. Should that be the case, I will have to stop immediately and move to PTU despite my reservations. She has assured me those liver effects are super rare and in people with pre existing liver issues only. And to help me ease into the decision, she has prescribed liver function tests every 4 weeks together with the TFTs.

    I don't want a RAI or a TT at all, so I will have to make a compromise if Carbimazole makes me unwell again... in 10 days of not taking it, my restin heart rate has increased of already 10bmp, so my levels are coming up again...

    Thank you everyone for your help.

  • martha01898
    martha01898 rita87269

    Posted

      Hello everyone, I'm new to this group.

        I have been on 5mg of methimazole and 25 mg of atenonlol for about a month  prescribed by my GP since being diagnosed with mild to moderate Graves.  My levels were

        5.9 free T3, range 2.8-4-4, (pg/mL) 

         1.7 free T4,  range, 0.6-1.6 (ng/dl)

        TSH 0.01, range 0.34-5:60, (ulU/ml).

           I had pounding heart, pulse did not get that high, 113 highest, mostly 90-105, fatigue, sweating, depression, shakiness, muscle weakness.   My mom had Graves.   

       After about 3 weeks I developed an itchy rash with welts on my thighs and a foot.  I saw an endo at that point and she wanted me to switch to propthiouracil.  I don't want to switch. The rash has gotten better and my levels after about a month on the 2 meds are now:

         Free T3: 4.0 

         Free T4: 1.0 

         TSH 0.02

         I also had a slightly high BUN level : 25, (range 6-21), and a BC ratio 33.8, (range 7.3-21.7). I will  ask the endo what those are.  

         I also am going to be seeing a naturopath/functional medicine MD in about a month.  I started taking Evening Primrose oil, and I also take B and multi vitamins. I am anxious about medications and hate to take them!  I'm 74 and have always been healthy before this. No other medications or health problems except for depression. 

    2 questions :  is the allergic rash a sign that the methimazole isself harming me?   Or could I keep taking it if the rash is getting better

         From your experiences if the Free T4 and Free T3 are now within range,  can I possibly get off the meds even if the TSH is still too low.   Do not want to go into hypo since my depression has been getting worse. 

          Thank you for reading this tome!

           I don't know if I'm posting this in the right place. !  

            It says "reply to Rita"?

    • linda187
      linda187 martha01898

      Posted

      Hi Martha

      You are posting in the right place as this is a Board for patients with Hyperthyroidism and that is what you have.  I too had levels such as yours when I was diagnosed with Graves and my Free T3 and Free T4 normalized in mid range when I was given 10 mg of Methimazole.  I did have some problems with hives like rash on my forehead or face.  I swabbed the areas with a prescription lotion on a cotton pad called Betamethasone scalp lotion and I could feel it working, i.e. the discomfort from the rash was leaving.  It was like this lotion was telling my immune system, "go to sleep, false alarm".  So on low dosages, I could tolerate the Methimazole.  However, my TSH would not rise from 0 until I added supplements, especially L-Carnitine which I read about in a research article.  Then it began to rise.  I got tested for my Total Carnitine and Free Carnitine levels and found out I was deficient in carnitine (an amino acid normally found in the body), I was deficient in vitamin D and I was low in Magnesium.  I added these back as supplements.  My doc was then able to lower my meds dosage.  My Endo would never stop the meds unless a person tested normal for the antibodies and even then, I am reluctant to stop it altogether.  I take 2.5 mg a day 3 or 4 times a week and all my levels are within range, including my TSH.  I have suffered from depression in the past and the med that worked for me for that was an old drug called Tofranil (generic name is imipramine).  It has side effects on therapeutic dosages but again on a low dose, side effects were tolerable and it helped improve my sleep immensely.

    • martha01898
      martha01898 linda187

      Posted

      Thank you Linda!  I've been so anxious about this as I have such an aversion to drugs.   My mom way back in the 50,s had such a horrible time with Graves, ended up having to have her thyroid out, major hair loss, etc.   My endo doesn't think supplements will do anything but she's not against them if I run it by her first.  Don't know if she will test for levels.  I can ask.    I'm waiting for an appointment with a naturopath.   I bought l-carnitine but haven't started it. 

      I haven't heard about Tofranil.  I have been on Lexapro several times, had some issues stopping it. 

      Again, thank you for your response. You helped immensely!  Glad I found this board. 

Back to top
Prev

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.